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2020 Rare Disease Week Legislative Conference Materials

Information on Legislation:

Legislative Conference Agenda

Rare Disease Week on Capitol Hill Program Booklet

One-pager on Creation of the Rare Disease Center of Excellence at FDA

Sign on letter for the Rare Disease Center of Excellence

One-pager on Funding for the Orphan Products Clinical Trial Grants Program and Natural History Grants Program

One-pager on Newborn Screening Saves Lives Reauthorization Act

One-pager on Rare Disease Congressional Caucus

One-pager on BENEFIT Act

One-pager on Medical Nutrition Equity Act


Logistical Information:

Schedule of Events with dates, locations, and metro stops

DC Metro Map

Map of Ronald Reagan Center

Map of Capitol Hill

Instructions on How to Download Voter Voice App


Additional Resources:

State Specific Congressional Scorecards (printable)

Information on Fast Forward for Rare Video Suite at Legislative Conference

Informational Webinar on Rare Disease Week on Capitol Hill 2020–December 12, 2019

Rare Disease Week Deep Dive Policy Webinar–February 13, 2020

Rare Disease Week First Time Attendees Orientation Webinar–February 20, 2020

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© 2019 Rare Disease Legislative Advocates
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